Does anyone, suffering from ET, have constant headaches? If so, what is being advised, what is helpful?

[Tinkerbell13]

I am 72. Interestingly, mother had PV but told never handed down from mother to daughter....ET same mpd family but strange coincidence! Has anyone out there similar experience?

[Aime]

Hi Tinkerbell, if you have constant headaches I would go to your GP and your haematologist to check why this is happening. Have your bloods and blood pressure checked to make sure everything is ok. Don't keep going without having this checked out. Kind regards Aime

[Tinkerbell13 in reply to Aime]

Many thanks...yes, have been checked..haematologist thinks could possibly be warning of a stroke to come and wants put me on high one day dose bisulfan - am not keen, looking at side effects! Interested hear if others with ET have lots of headaches....

[Tinkerbell13]

Many thanks...yes, haematologist checked bp. but thinks headache could possibly be stroke warning. Suggests, if it persists, a one day v high dose of Bisulfan (worrying sound side effects!) and wonder if lots of ET sufferers out there do have persistent headaches, i.e. is it part of the disease?

[Irishmod]

Hi. I have ET, I'm 52 and diagnosed nearly 2 years. I take 75mg of Aspirin and 1500mg of hydrea. Before I was diagnosed I had a headache everyday and used over the counter medicine. After diagnoses I was only on 75 mg of aspirin and since that day I have never had a headache again its been wonderful to be headache free after all those years. Hope this helps, are you on aspirin?

[Tinkerbell13 in reply to Irishmod]

Thank you - v helpful.

[Tinkerbell13]

Yes, on aspirin. Did v badly on Hy, so had to come off it a year ago, but pleased you are doing as well as you are. Thanks so much for taking trouble to reply.

[Tinkerbell13]

Yes, on aspirin...did rather badly with hydroxy, so had to come off it a year ago; pleased you are doing as well as you are. Thanks so much for taking trouble to reply.

[Tinkerbell13]

Helpful, thank you

[Tinkerbell13]

Helpful, thank you

[rubyrubyruby]

I have ET. Since starting on Aspirin my headaches and migraines have really reduced.

[graymare]

Are these headaches happening after your platelet counts have been lowered to normal?

[Tinkerbell13 in reply to graymare]

Not reduced yet - about 800 - still with just aspirin as reacted so badly to Hydrox.

[DENMOOR in reply to Tinkerbell13]

Hi in what way did you react to hydroxy? I have been on it 12 years now .

[Tinkerbell13 in reply to DENMOOR]

Excuse late reply...had horrible fevers, shivering, shaking, so ill, couldn't even drink water, terrible sweats that went on day and night and lost vast amount of weight and was also very sick....to be fair, though, I never do well on any drugs. Hope you do, however. Best wishes, Tinkerbell

[DENMOOR in reply to Tinkerbell13]

Hi

Bless you. What are you on now? Am ok on it but my feet are burning every night in bed n sometimes get ulcers in my mouth along with fatigue -:((((((

Den x

[Tinkerbell13 in reply to DENMOOR]

Sorry re your mouth ulcers. Years go, was recommended sucking peppermints for those, but never actually tried that. Am not on any drugs. Though took aspirin since diagnosed 18 months ago. V bad night sweats but prefer not to be on anything. Platelets vary between 760 and 870. Haematologist says a million is the point at which she would insist I go on something (bisulfan). In the meantime, just eating well, walking and hoping platelets don't rise. Do get tired, but then am always on the go! Best wishes to you. Tinkerbell

[DENMOOR in reply to Tinkerbell13]

Ahh Tinkerbell you do so well. My count is around 450 to 500 but on 1000 mg a day of hydroxycarbpmide. I have terrible night sweats and shivers some nights. It's terrible

Den x

[Tinkerbell13 in reply to DENMOOR]

Have to be honest and do have bad night sweats but just take it for granted now that every night, will be woken up, sometimes every hour, sometimes every 2 hours. But when on hu, it was unbearable and was having to change bedding and nightclothes up to 7 times a night! Do sympathise with you. Tinkerbell

[DENMOOR in reply to Tinkerbell13]

Oh no that's terrible ! Must admit I am drenched some nights! Thanks for replying . Take care x

[Tinkerbell13 in reply to DENMOOR]

You too. x

[shellsween]

I used to have headaches all the time as well I also had a few tia's and after taking low dose apirin they did stop.

[Tinkerbell13 in reply to shellsween]

That is encouraging and hope I follow suit. Many thanks.

[Tinkerbell13 in reply to shellsween]

That is encouraging...thank you.

[sand-bog]

Hi Tinkerbell13 - I too am 72, diagnosed earlier this year with PRV and on aspirin and hydrozyurea. Funny you should mention about your mother, I have a sister-in-law with it too!

[Tinkerbell13 in reply to sand-bog]

Most interesting hearing from you - coincidence re sis-in-law...! Thank you for reply

[beetle]

Hi Tinkerbell13. It was headaches that led to my initial diagnosis. They would completely disable me and all I could do was retire to bed. I was on busulphan initially too as Hu was not effective and did have side effects from it. That was 19+ years ago and I have now progressed to MF. I have moved about a bit in that time so have had several different haematologists - one of whom would not use busulphan in anyone under 80 because of its potential side effects. My headaches eventually reduced but can still be a problem even now. I think I got into a cycle of painkillers actually causing the headaches. My platelets are finally under control on Jakavi but I realise that there is a big problem obtaining this drug. There are trials involving ET at the moment so might be worth asking your haematologist about that. I hope you get some relief from them soon as they can be so debilitating.

[Tinkerbell13 in reply to beetle]

Really helpful...thanks so much. Yes, hear new trials causing interest in the States.

[Hayley2011]

Hi

I am 39 and have ET prior to starting anagrelide in May I had headache 4 months solid, platelet count was 1600. Since treatment much better, with reduction of platelet count, I still get headaches lasting couple days or so at a time. Could not take aspirin as this increased my bleeding. Hope this helps, at time I didn't realised how debilitating they are, first day with relatively clear head I thought something was wrong!!

[Tinkerbell13 in reply to Hayley2011]

Thank you - encouraging.

[aberbrothock]

Hello Tinkerbell13, I have ET and I am 71yrs of age but do not suffer from headaches. I have to take Hydroxycarbamide to reduce the platelets and can suffer side effects of tiredness, aching bones and muscles. I agree with Aime always get these symptoms checked by the professionals as they may be nothing to do with the ET condition.

[Tinkerbell13 in reply to aberbrothock]

Yes, really good advice. Thank you.

[Tinkerbell13]

Thank you for good advice.

[Chrissie10]

Hi Tinkerbell13, I am being treated for PV, but not definitely diagnosed yet. I have been suffering headache for the last 10 days and went to get blood tests. All normal except for low ferritin, so am putting mine down to that. I am not sure if you get low ferritin with ET?

[Tinkerbell13 in reply to Chrissie10]

Will check this out, thank you...hadn't heard of ferritin!

[harleydavidson]

Hi Tinkerbell13, I hope your head is a little better today. I have PV and my dad had MF, although I suspect it started with PV as he had many of the same symptoms that I do. ps my ferritin is 8 and I to suffer with headaches. I had a scan a few months ago after a 13 day headache to check for clots, I had none thank god! Always get checked. Melanie x

[Tinkerbell13 in reply to harleydavidson]

Thank you, Melanie. Do you get night sweats too? When they really bad, headache bit better! Tinkerbell

[harleydavidson]

Hi Tinkerbell13. No night sweats, poor you. Glad your head is a little better. Melanie x

[Tinkerbell13]

Thanks, Melanie - all these MPD folk sound really nice! Tinkerbell

[Tinkerbell13]

Good to have so much support.

[Geoff_mpnfamily]

Hi I have secondary polycythaemia, treated with asprin and venasection, and my daughter was diagnosed with secondary polycythaemia too her hct was a wopping .71. Though she no longer has it now. She also only had platelets of 20 so after a transfusion everything balanced out over a couple of weeks. It was put down to stress in the womb.

Also her heart kept slowwing to almost no heart beet.. my wife pushed her out in minutes after we realised something might be wrong.

I hope your headache is better now.

Geoff

[Tinkerbell13 in reply to Geoff_mpnfamily]

Good to hear your daughter doing well - seems rare having 2 cases in one family - told I am rare having had a mother with polycythaemia. she was reckoned to have highest world count!

[Mwalimu]

I have ET and my platelets are under control with 75 mg aspirin per day and 500mg HU X 6 days a week. Before diagnosis as well as now I often wake up with a headache. It clears quickly when I get up and move - sometimes I feel 'movement' in my head like catarrh (which I used to think it was). Have never thought to mention it to haem. but will at next appointment. Hope you get yours sorted out. Sallie

[Tinkerbell13]

Interested you seem to be o.k. with HU (I was a disaster with it!) and yes, I feel that peculiar sensation in my head too and wonder if it is what the MPD people refer to as 'lightness in the head'. Thanks for your reply. Tinkerbell

[Tinkerbell13]

Thanks, and see reply to Sallie.

[Mwalimu]

Tinkerbell. Have always interpreted 'lightness' of head as dizzy/'other world' feeling. My headache goes - thank goodness, very quickly.Get up, go to loo, make coffee, go back to bed and it's gone.! Had a few probs with HU initially - blisters on lip, ulcers in mouth, soles of feet tended to blister/ be sore. But, my body adjusted, probably because I only had 500 mg a day.

[Tinkerbell13]

That's good - you're right re dizzy - though I too get that weird feeling you described earlier. Glad you got sorted re HU - the haematologist was v enthusiastic about its use and rather dismayed I reacted so badly..hey ho! Thanks for your reply. Tinkerbell.